Select Committee on Science and Technology Written Evidence


Guidelines for issues to be addressed when considering support for collections of human samples (3 August 1998—revised from 4 December 1997)

1.  Legal issues

  It is unclear under UK law whether it is possible to own a sample of human tissue and if so, who would have rights of ownership over the sample. Until the legal position regarding samples has been resolved, it is recommended that in practice the issues relating to the use and transfer of samples for specific research purposes should be addressed by obtaining appropriate consent.

2.  Governance of access

  The governance of the family collection should be addressed at the time of funding; for example:

    —  Composition of steering group or advisory group (this should usually include independent members; funding agencies may also wish to be represented).

    —  Conditions of access (eg academic research purposes, commercial use, ability to transfer resources to third parties, return of data etc).

    —  Prioritisation and exclusivity of access (eg is access open to all or prioritised by a steering group—and on what basis?). Will groups involved in establishing collections have preferential access?

    —  Distribution and maintenance of samples will have substantial financial implications over the long term; how will these be addressed and what mechanisms for cost-recovery have been proposed?

3.  Consent

  Informed consent should be obtained, researchers are asked to consider carefully the consent that is obtained at the outset as this may reduce the need to seek reconsent at a later date. The following issues should be addressed in obtaining consent from patients:

    —  The nature and scope of the study; this may be in general terms or relate to a specific study. The information should be explicit about the circumstances in which further consent will be requested.

    —  The scope of access to patient material or information derived from the samples; potential commercial access, access of researchers not directly associated with the clinician or researcher who obtained the sample and whether material will be archived or destroyed.

    —  Consequences of findings. The potential for general or specific individual feedback should be explicit in the information provided.

previous page contents next page

House of Lords home page Parliament home page House of Commons home page search page enquiries index

© Parliamentary copyright 2000